Let me tell you all about how a corner in a waiting room became my home today. I took my son Gianni to therapy for a 1:45 appointment. We arrived at 1:30. When we arrived they said it wasn’t until 2. We are in the lobby. Gianni is acting insane. His body won’t stay in one place. He’s screaming the most highest pitched scream he can manage. It’s a very small waiting room. EVERYONE, and I mean everyone, is staring at us. I tell him to use his inside voice.…
Read MoreWe moved this past spring. My husband and I found the perfect place. Five acres, off the road, down a long winding lane lined with trees, no neighbors, surrounded by nothing but farm fields. The property boasts a three car garage with a spare room on top. A barn that’s been gutted and restored, as well as a fish pond that is spring fed. The previous owners planted fruit trees- apples, pears, peaches, and cherries. Grapes hang from the vine, begging to be picked. It only gets better. The inside…
Read MoreI never planned on having a child with a disability. I planned my education and career around helping others through things like this, never dreaming in my wildest dreams it would personally affect me. But…. I wouldn’t trade Jackson or his diagnosis for anything in this world. When you hear people who have children with disabilities say their child is their greatest teacher in life, believe them. They have this beautiful way of helping us see life for what it should be. Simple. Purposeful. Full of wonder and of lots…
Read MoreThere are fourteen steps leading to the second story bedroom. Fourteen. That doesn’t seem like a huge number, but in our world, it is. My daughter Samantha is a brilliant, happy, loving, and beautiful 13 year old girl who was born with CHARGE Syndrome, and later diagnosed with Autism. She doesn’t speak much, and not many people can understand the words that she uses, but I can. She is not a typical teenage girl, she doesn’t understand make-up, Snap Chat, or why it’s important to have so many friends. She…
Read MoreA single act of kindness may seem isolated in the moment, but kindness often paves the way for beautiful things to happen for years to come. Sometimes this beauty may not be revealed until over a decade later. At least this was the case with my daughter, Lizzie, a boy named Sam, and kindness shown to me by his mom, Angie. I was introduced to Angie in a state of desperation. I had just been told some unsettling news by a speech pathologist family friend. “Your daughter is showing all the…
Read MoreYesterday was Autism Awareness Day. Autism awareness month is hitting our family hard this year, and frankly, my heart is broken. Many of you may know that my son Christopher is enrolled in a residential school for Autism, a school for kiddos with heightened behavioral challenges. We visit there every Wednesday, and bring him home on the weekends…every weekend, without fail. Until now. His school informed us that they are in lockdown. He has been there, hunkering down, with his peers, teachers, and therapists. We were told if we brought…
Read MoreI am autism. I am funny loud big. Yet I am quiet. I am a slippery riddle—a puzzle piece upon the bumper of a car, a black sentence upon white paper, a curious phenomenon. I am the month of April, and the color blue. I am a number. A statistic. A stereotype. I am a social story before July fireworks. A schedule fixed to the refrigerator. I am speech, and ABA, and occupational therapy. I am autism. I am a boy. I can be silly. I can be serious. I…
Read MoreI’ve heard it so many times. “Just wait until they start talking, you’ll just want them to be quiet”. I see memes like this and while I know it’s said in good humor, it’s also a little heartbreaking. Not everyone hears “mom”. Some children are deaf, non-communicative, non-verbal…parents lose children every day, and would give their whole life just to hear “mom” one more time. My daughter doesn’t have a name for me. The last time she said “mama” she was 10 months old. In fact, neither of my kids…
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